Being forced to fight for things you never wanted to need.

It Must Be Mum

“Because you want him ‘Out of County'”

For parents of children with additional needs this paradox (fighting for something you don’t want to need) is normal.  It ranges from constant, every day, exhausting mini-dramas, to full out, full scale all consuming battles for survival where you have 3 choices: remove your child from school altogether, force them into a situations that will cause lifelong harm (school’s that ban playtime and use restraint and seclusion daily for example) or fight for something you never wanted to need.

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It Must Be Mum

I’ve been wanting to write about this and still can’t really find the words.  I want ‘people’ to stop and think, really think, about what it might be like to see your child in emotional pain, extreme fear, anxiety, confusion and significant distress every day.  Literally every day.  Many times a day.  Often so severe that hysteria and / or dissociation is their only escape.

Sometimes they will scream and sob, stuff clothes into their mouths to reduce their own noise because even their own noise hurts their ears.  Sometimes they dissociate and completely become some-one or something else.  Their screams and cries when in this state are indescribable, Peter would dig holes in the carpet with his fingernails to try to escape, crying ‘die’ over and over.  Sometimes he would regress into a baby state so significantly he was unable to walk or talk.  Sometimes he was a dog…

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Dear Teacher, Respectfully Autism

Dear Teacher,


I know you’ve been in work since before the birds got up and that the paperwork is still sat on the desk from yesterday with your lunchbox as you didn’t have a moment to breathe between the meetings, teaching and the hustle and bustle in between and that my early morning squeal as I rock on my chair is something you possibly find hard to deal with and bite your tongue under your breath as you politely say “Please stop rocking” and guide me and my chair safely back on all four legs.

As my class friends settle down, my tapping begins as you try and teach your lesson. You may find this annoying, I wish I could say I was sorry but in fact I’m not sorry. I love tapping, tapping helps me to process your lessons. A lesson in which on the outside may look like…

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Some of the questions about the role of the SEND Governor which matter

Governing Matters

The other day StarLightMckenzie led a @UKGovChat discussion on “How can governors ensure SEND gets the attention it deserves?” There were some very important questions raised during the discussion. I thought it would be helpful to collate them here.

  • Do you consider it good practice to have a single SEND Governor even though it’s the responsibility of whole GB?
  • Where SEND is key role for one governor, how do we ensure the rest of the GB take responsibility?
  • Does it make a difference if the SEND governor has SEND themselves or is the parent of a SEND child?
  • Should the SENDCo work closely with and report to the SEND Governor, if there is one, to ensure best practice for all?
  • How often should the SEND governor meet with the SENDCo?
  • Is it better for the SEND Governor role to be taken on by a parent, community or staff…

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It’s Monday – My School Diary

It’s Monday, school life diary.

My shoes, tattered and torn and scuffed ramble with me up the lane to the school gate, “Good Morning Hadley” said our headteacher Mr T, I carried on walking. Head hung low, to scared to offer any eye contact and the busy overpowering buzz as conversations between my peers around me grew, nattering a way to each other. It hurt my brain, I didn’t understand to them simple conversation, it was just a muffled noise. I continued to drag my feet with the buzz in my head with a headteacher just a few yards behind me making sure I wasn’t going to bolt as quick as bullseye up to the school entrance where for a moment I paused, I opened the door and the light hit me from those stupid florescent tube lights, sounds of chairs from classrooms all being pulled out and teachers shouting…

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In my own words : Sam #WDSD17

The Diary of a Not So Ordinary Boy

Reproduced with permission for World Down’s syndrome Day.

Where I live : T

Who I live with : mum and daddy my sister L and brother A.

What enjoy : playing with cars and going to grandma’s house. I like going shopping and watching tv and dvds and going to the park.  I love to play with my Eddie Stobart and listen to music and read.

What am I good at : I am good.

These are some of the photos Sam has taken with my old phone.  We hope you like them

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